Unmasking blessing

October 1, 2000

Joan E. Blessington Snyder gets excitable, but it can be hard to tell.
Where once the most vivacious waitress/bartender at Peoria Pizza Works
might wink and smirk and laugh raucously, she now nods and crinkles her eyes.

Where once she might juggle three mountainous plates of salad while
tiptoeing sideways through close-set wooden chairs and hollering jokes with
five tables of patrons simultaneously, she now struggles to speak above a
whisper.

And where once she would stay up and party to help promote Peoria's
late-night blues scene, she now needs a nap before bed.

Getting to middle age is a long road for all of us, but it has held some
extra bumps and turns for Joan. She still gets excitable. She still tends
to generate a party wherever she goes. But these days most parties must
come to Joan.

For the last 11 years, since she was 38, Joan has been grappling with
symptoms of Parkinson's disease. A particularly sad and vicious illness
that affects more than 1 million Americans, it gradually robs people of
their physical abilities while leaving their mental capacities intact.

Parkinson's has replaced Joan's once-animated face with its own flat mask.
It has taken her liveliness and made her confront death. It has taken her
wide-ranging interests and shrunk her world to her own four walls.

It also made her co-author a book reviewed by magazine editor Helen Gurley
Brown, sparked friendships with people around the world (including a pair
of multi-millionaires), and got her picture taken with actors Richard
Dreyfuss and Ted Danson.

Once again, just last weekend, Joan was the toast of the party. This time
it was a seven-day fete in New York City - and Chillicothe's Joan E.
Blessington Snyder was one of the guests of honor.

Being diagnosed with a progressive neurological disorder is not
party-inspiring news. No one wants to think she is going to have trouble
walking and talking, that she needs brain surgery, that she may shake and
drool, that she may die.

Fortunately for Joan, she was diagnosed during the advent of the Internet.
Not only is it a valuable source of medical information, but also computers
can erase many of the problems generated by slurred speech and difficult
movement, and ease the depression that often follows the disease.

As you might expect, Joan logged on and made friends. During the past
decade, she has been able to share the grief and challenges of Parkinson's
with others who understand, including poet/writer Dennis Greene of Perth,
Australia.

"It seems as God takes away some of your talents, you turn to other
things," she says.

Writing vents the anger, the fear, and the frustration, but it is not the
only creative outlet unleashed by Parkinson's, and the Internet is not the
only way to make connections.

Joan was sitting in a Chinese restaurant when someone overheard the
conversation and introduced herself. The woman's name was Jane Scott, and
her father, Claude Scott, had been a teacher in Chillicothe for many years.
Jane and family friend Marc Esser had chronicled Claude's decline and death
from Parkinson's in an exhibition of paintings and photographs they called
"The Letting Go - A Parkinson's Story."

When Joan found out there was no money to exhibit the artworks and they
were confined to storage at Caterpillar Inc., she had "a fit." Her fits
usually turn into action, and that art became a key part of the first
Parkinson's Awareness Day, staged in 1999.

Since then, she helped set up a second Parkinson's Awareness Day, arranged
for a dozen others with Parkinson's (including Greene) to meet in person
for the first time and became one of five national board members for People
Living With Parkinson's.

Oh, yes. And she co-edited a book.

Voices From the Parking Lot

It wasn't easy, but in retrospect it seems inevitable. In seeking money to
exhibit Scott and Esser's work, Joan got to know Princeton, N.J.-based
Parkinson Alliance vice president Margaret Tuchman.

A key figure in the fight against Parkinson's, Tuchman was diagnosed with
the disease in 1980, and helped lobby for the Morris K. Udall Parkinson's
Research and Education Act. Four years ago, her symptoms had become so
severe that she was falling down in the family's real estate management
office where she worked. Since then, Tuchman and her husband, Martin, have
devoted much of their time and fortune to finding a cure by 2005.

Martin Tuchman is CEO of an incredibly profitable cargo container supply
company called Interpool. The New York Times reports that with 125
employees worldwide, the company had $22.6 million in profit last year,
which was an off year. Obviously, the Tuchmans have resources to mobilize,
and they've done it in a cunning way.

The Parkinson Alliance works to coordinate information between the varied
Parkinson organizations. And every dollar it raises is matched by a dollar
from the Tuchman Foundation they started with Martin's brother, Herbert.
The money is used strictly to fund pilot studies on the cutting edge of
research.

So when Margaret Tuchman learned of all the art and the writing and
computer connections, she saw what Joan had not: A book.

"I was always struck by the talents and sensitivities of people with
Parkinson's," Tuchman says. "When I saw the pictures that Jane Scott and
Marc Esser did, the whole thing fell together."

Joan and Dennis Greene collaborated, writing some pieces and compiling
contributions from other people. Poems and reflections on the disease were
selected from central Illinoisans - like Tom Kelly of Peoria and Claude
Scott's granddaughter Sarah Ragains of Eureka - as well as contributors
around the United States. The first version, like Parkinson's itself, was
stark.

When local photographer and author Jack Bradley heard about it, he bluntly
told Joan to forget the whole thing. She cried, then decided to make him
read it anyway and stuck the manuscript on his doorstep at 3 a.m. A sudden
onset of gout in his toe had kept Bradley awake and feeling bad about the
encounter all night long. Finding it outside, he sat and read the entire
book, then called Joan back.

"This is amazing," he said, shifting immediately into one of her biggest
supporters.

That was many changes ago, and the evolution has been painful at times. The
final version, now called "Voices from the Parking Lot" and subtitled
"Parkinson's insights and perspectives," has been toned down considerably,
in an effort to make it more palatable. As Parkinson Alliance executive
director Carol Walton says, the book provides information that was once
hard to find "in not a negative, not a whiny way."

Dennis Greene sees it as a book that can apply to anyone. "The book is not
about Parkinson's, it's about people. It's about how people respond to
life-altering circumstances. ...' We all happen to have something."

The Tuchmans believed in the project so much that they contributed $50,000
from The Tuchman Foundation to print the books. Their involvement persuaded
Helen Gurley Brown, editor-in-chief of Cosmopolitan International Editions,
to write a review in the front of the book.

"As an editor I marvel at the writing ... so beautiful," her review says,
in part.

"Voices from the Parking Lot" was launched Sept. 24 along with the
Parkinson's Unity Walk in New York City's Central Park. Joan and her
husband Stan Snyder were guests of honor at several special events.

"It's like we won a contest or something," Stan says. "We were treated like
stars."

Joan saw a few, too.

"So I was sitting at the table, selling books," she says. "Up walks this
short little guy, bald head, freckles ... He started talking about the
book. I realized it was Richard Dreyfuss."

She met Helen Gurley Brown and Ted Danson, as well. But there were so many
people around that husband Stan missed all three.

"And I wasn't 50 yards from her the whole time," he says.

Jane Scott was unable to go to the book launch, but she is still pleased to
see her artwork become public in a book dedicated to her father.

"I think that's a very big honor, for both him and my family," she says.
"It's been a long time coming, since we did this exhibit, to see it leap
forward like this. Joan has done so much for that."

There's plenty left to do.

Five thousand copies of the book were printed, and 2,000 must be sold to
break even. Although Harvard University bought 100 copies and Martin
Tuchman bought 600, there are plenty left to go.

The book costs $25, plus shipping and handling. Net proceeds will be used
to finance pilot study grants under the name "Voices from the Parking Lot."
Copies can be ordered from The Parkinson Alliance, 1-800-579-8440.

"We are eager to continue," says Margaret Tuchman. "This is not a one-shot
deal."

It may not show, but Joan E. Blessington Snyder is excited to be onboard.


by Terry Bibo
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The Peoria Journal Star
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janet paterson
53 now / 44 dx cd / 43 onset cd / 41 dx pd / 37 onset pd
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